Yesterday afternoon went almost as I expected and I was almost right as to what the role of an MS Support Worker is. They are the halfway house between me, doctors, social work and volunteer agencies, so not qualified as any but with an idea of all, sounds like a lot of jobs these days, a bit of this and a bit of that but none totally. We sat and talked for about half an hour and went over the things that I expected, but I then took it to the areas that I was questioning in my post yesterday. I felt as though he had been given my post to read before he came here as it was almost word for word what I thought I would hear, he strongly recommended that I have a carer, someone who would come here each morning, not to wash me or anything, but to push me into doing what is needed. Fortunately he understood when I explained to him just how crazy it all sounds even to me that I can’t remember to do the simplest things, that lists and reminders set up on my PC don’t get me to do what anything, they just get clicked away with an intent to carry them out later, or after I have completed what I am doing, but then get totally forgotten. As I wrote yesterday I am not ready to make that step, to have people here in my home getting me to do things. The whole idea is just something I can’t settle in my mind it is too alien just now, regardless if it is something that is needed or not.
I also told him about the problems I now have if I fall, in that I can no longer get up as I just don’t have the muscle strength to manage it in either my arms or my legs, in fact I think I gave him quite a full picture of just how things have progressed in the past year. As I expected there are no answers to any of it, just as there never has been. He at first suggested an OT coming to see if there was anything they might be able to do, when I told them they had already been here and just wanted me to empty my home of everything, he laughed as confirmed that is always their answer to falling, make it almost impossible to hurt yourself when you do fall. He also knew exactly what I was talking about when I said Neurologist just listen, smile and nod, followed by a request to see you in another year from then. In some ways, I was relieved to here that my experience of what was out there and available in so-called help, was clearly the same as everyone else experiences, but that is actually so wrong. I actually would rather they all just put their hands up and said quite clearly from the start, that none of them can do anything to help and the facts are this, they are there to just listen and offer hollow words of reassurance and to look out for the point where their help might be needed, when we are too ill to do it all for ourselves, rather than wasting our time and energy in stupid pointless visits. Not only would it be honest, it would also save a fortune for the NHS, if they want to save money well there is one huge bill that could be slashed, get rid of the nodding heads. He left here telling me that he is going to firstly write to my GP so that he is aware of the problems I am having, then he is also going to write to me, with all the contact details for the services that are there to help me.
I had a couple of hours before Adam was due to be home and I was exhausted, emotions had been running high for me and just like physical activity, emotions also drain me, just in a different way. I went to bed but I wasn’t too surprised when the result was to just lie there and rest for a while, there was just too much going on in my head. It gave me time though to start to work out what I am going to do and how I am going to cope, I can’t do it on my own, but my past attempts to get Adam to help me in the way I need it, had totally failed. He for some reason just hasn’t been able to take on the role of telling me and pushing me into what I need to do. His idea was to use subtle reminders, for example, if I was needed to sign something the paperwork was just left on the kitchen counter, with no words from him as to it being there or what I needed to do, the result being they just lay there untouched. If I am going to keep the carers away I have to make him understand what is needed and for him to take on that role fully and not as he has in the past. I knew I had a difficult conversation ahead of me and one that I was going to be left just as drained by as I had been already that day.
We talked for about an hour, going round and round and getting nowhere to begin with, he just didn’t seem to understand the problem and what I needed from him, but eventually, we got there. I know he is going to find it hard, he has never been the sort of person who can be forceful and tell other what to do, he is more the quiet person who does what he is told. We are going to try and see if we can between us manage without outsiders being involved, he is to tell me if I go past two days without a shower, to have one, not to suggest but to tell me and to not allow me other than when I am too tired, to get away with it. Adam is very good at knowing when I am too ill to deal with it, so I know that we won’t have a problem when it comes to that, in fact, I trust him more on that point than I would on any outsider. I know it is only the first step there are several other ones that I am purposely leaving, for now, things like using my catheters is a far more difficult one, but also one that I am not sure how even a carer would be able to help, it has to be one step at a time for now. If it doesn’t work, well maybe then there are no other options than to use the list that is on its way and to accept that we simply can’t deal with this by ourselves.
Please read my blog from 2 years ago today – 04/07/12 – Not just nerves
I am having one of those painful days, not scream and double up in agony, no the subtle and more where you down by the minute pain. I can’t remember when I last had a day free of spasms anyone in the same room can see the cringe and grab of a bad spasm but not all of them are like that. There is a much more gentle in its approach spasm that grasps a muscle and holds, to describe how it feels I would say it is more like someone has grasped it with their hand with a constant……